Tuesday, July 15, 2008

Autism, the Tummy, the Brain Gut Connection... No One Solution

Autism and the tummy, the brain gut connection, getting help wasn't easy. 
The Problem: Nicky’s had tummy problems and allergic reactions since birth.

His History, the symptoms: He was delivered by c-section and while in the hospital everyone commented that he seemed to always be thirsty. When we got home he cried and cried after each feeding. I went back and forth between nursing and special dietary formulas and nothing helped. Nicky spit up and cried constantly. There were days I changed cloths every hour because I was soaked with baby up chuck from my shoulders to my waste! He cried so much he developed a herniated belly button. He was covered with rashes, suffered from sleep deprivation and weight loss. We visited doctor after doctor and never got an answer. Colic, food sensitivities, an allergic reaction to something I was eating that was showing up in my milk and fussy baby were just a few of the possible answers. The only relief came in the form of a nurse who took pity on us when she saw Nicky’s herniated belly button and heard our stories including his impending surgery to repair his hernia. She suggested an old family remedy; secure his belly button under a silver dollar taped to this tummy. She told us how she had seen her grandma do it and the kids stopped pushing it out and it healed. I was willing to try anything and since this did not sound dangerous I decided to give it a try. I found a silver dollar and attached it with some heavy tape and IT WORKED, his hernia began to heal. It was the first thing we did, that worked. I remember thinking “Thank God” for the grandma’s of the world.
After many months the symptoms reduced, they did not disappear, but they lessened. We had good days and things seemed headed in the direction of normal. However it was not to be, as his stomach problems were replaced by ear infections and finally pneumonia. When he recovered from his pneumonia he was withdrawn, he no longer spoke and he had no interest in interacting with any of us. He had begun his decent into autism. A few months later he was diagnosed with ASD and then he developed diarrhea that lasted for 2 years.

The Medical Shortfall - After his ASD diagnosis, in addition to all the doctors and therapist we visited for the treatment of autism, we saw several Pediatric Gastroenterologist. They all acknowledged that they were seeing more kids with ASD with similar symptoms, but they did not know the answers. Basically, they could run the tests they had, but they doubted that their tests would lead to a solution. They ran the tests and they were in-conclusive. They always checked for Celiac, which never showed anything and they would run other tests typically associated with his symptoms and they didn’t show anything either.

Finally Help in the form of Bio-Med: I kept telling people about my struggle and finally I was told about a doctor who was both a neurologist and a psychiatrist who was helping our kids with gut problems and allergies. This doctor, Jacqueline McCandless was certain that there was a brain gut connection in autism and she thought she could help. She explained that because of the diarrhea Nicky was not getting even basic nutrition, because nutrients could not be absorbed and distributed through the body, including the brain, through intestines that were swollen. She ran a truck load of tests, gave Nicky some probiotics, a liquid vitamin supplement and asked that we limit his diet to only a few fresh foods. We choose his favorites chicken and potatoes. In two weeks his diarrhea was gone!In the months to come under her direction we implemented much of the WFGF and DAN diets and protocols’. In the end Nicky did not respond to most of the protocols, but I was always grateful that she was able to stop his diarrhea and improve his general health. Nicky's behaviors did improve, but I believe the improvement was directly related to him not having stomach aches everyday. Which I know would make me cranky!
Dr. McCandless wrote a book on this subject and later retired, forcing me to look for a new bio medical doctor or practitioner. I tried several but I never felt confident. They were either too quick to offer “cookie cutter” treatment plans complete with expensive medicines they dispensed from their own back rooms (which may have been okay but I always got that Amway salesman feeling) and/or they lacked professional follow up. I am sure there are others like Dr. McCandless, but I did not find them. Since that time I have acted on several referrals to Pediatric Gastroenterologists who were credited as “understanding our special kids”. Each time I was disappointed as they began by testing for Celiac!!!!
Yahoo a Pediatric Gastroenterologist who get’s it! Seems time and science both march forward. Nicky has continued to have gut problems and allergy problems that have gone unsolved. Yesterday, at the recommendation of Nicky’s neurologist, we met a new Pediatric Gastroenterologist. She was fantastic. She did not begin by ordering a test for Celiac disease and she listened. She was interested to hear about Nicky’s stomach problems since birth. She expressed her certainly that there is a brain gut autism connection and that she believes these kids can be helped. She agreed that we have to do what we can to keep our kids off of antibiotics as they do so much damage to the gut and immune defense (resulting in vicious cycles of illness). She wants to move slowly and work closely with me as we take baby steps to see if we can get his gut healthy. We are going to start by cleaning him out (x rays and a exam show that he is filled with poo) and then we are going to begin to bring balance to his tummy with prebotics. I feel encouraged and I will let you all know how it goes.
What I learned:
  1. The medical community did not understand the connection of autism and the immune system. Although I had friends tell me that autism was auto immune illness and the more serious auto immune diseases in the immediate family of a child with autism, the worst the autism was, the medical community did not acknowledge this. Therefore they could not treat it.
  2. The medical community at large did not have the tests that would make it possible for them to find answers for our kids
  3. Bio med is not the solution for everyone although aspects may work for each child. You have to take on child at a time.
  4. This is not a one size fits all illness. Just because a treatment works on one
child does not mean it would work the same on another. No two kids can be compared to each other when it comes to treatment. Each has to be watched closely to see what they respond to.
  1. It can be really hard to figure out what is working when you are doing more than one type of intervention (which I always was) or there are major changes going on in a child’s life or routine. When we are doing intensive behavior intervention, medical intervention, and drug therapy we have to pay very close attention to what we introduce and when if we want to measure any type of progress.

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